I was diagnosed with Central Nervous System Vas last year (Sept 2011) after a lengthy stay in hospital (a lots of misdiagnoses before handd) and when I got out I was told by my rheumatologist that he would ensure that Neurology also gave me follow up appts and MRI of brain to check that no damage was done from legions/TIAs that I had in the lead up to diagnosis. I reminded him every appt and finally in August 2012 (after I got very upset) he wrote a letter to a 'friend of his' and I have had an appt for Nov. He also said that he would see me in 3-6months for my next appt with him and then I got an appt through for March 2012! When I phoned the hospital I was told that that was the soonest appt for him - 7 months after my last!

On top of this at the beginning of the year I explained that I was concerned that due to Cyclo treatment it may have had an affect on my fertility (as I have not had children yet, am only 30 and would like them as would my husband) so he arranged for ovarian function blood tests to be done. When I asked for the results at my next appt he questioned who had ordered them and told me he was not a GYN so did not know the outcome - only that they show a result of 32 - which he did not know what that meant. Even after asking him to find out, I am none the wiser - I hate being in limbo (esp. about something so important) it's like taking an exam and never finding out what grade you got.

Thirdly, at the beginning of the year my rheumy asked if I would like to go to Addenbrooks to see Dr Jayne and of course I said yes - but to date he still has done nothing to refer me so I took it upon myself to phone Addenbrooks a couple of weeks ago to ask if I could refer myself. The lovely nurse explained that I could not self-refer but my GP could do it - she gave me a fax number and told me the info that would need to be sent to them. As it had taken so long already, I took it upon myself to type up all the relevant info, went to the doctors asked to be referred to Addenbrooks, showed them the work (I had done for them) and the fax number and was questioned why I would want to go there. After outlining my reasons (as explained here!) I was told to "book a double appt for next week as we will have to go through forms, it will have to go to a board but I will do it." When I went back for my double appt yesterday, I was confronted with a different dr who refused to do it as it would 'take too long' and if the neurologist thought I needed to be referred he would do it in Nov. I explained that it is not just a question of 'needing' but also 'wanting' to be referred and do a patient's wishes not come into account - he tried to reassure me that if I still wanted to be referred then it will be much quicker coming from the Neurologist than from a GP surgery (although as it taken over a year to get an appt I question this logic!)

Also (sorry my rant is almost done!) approx 5 weeks ago I started intermittently losing hearing in my right ear, both have been incredibly itchy and waxy and my face has been hurting. Since then I have been to the drs every week (seen someone diff each time?!) and have been told that it's blocked so was given drops, had it syringed with no wax evident, been told it's an infection so been given antibiotic spray, been told it's something called Eustachian Tube Dyfunction so given more drops and a nasal spray... and yesterday I was told that it was just waxy and I should use olive oil and it would clear itself...eventhough it hadn't up to that point.

When I was in hospital and blaming myself for everything and stating that I should have made more of a fuss about all the problems I had before as I felt like my concerns and symptoms had been ignored for the 2 years prior to diagnosis, a kind neurologist said to me that from now on no doctor could ignore my symptoms and even a cold would have them questioning whether it's Vas related, but at the moment I feel exactly the same again. This time though rather than blame myself I have tried to be proactive and still I am getting nowhere. I feel like not only am I being ignored, I am being left to 'see what happens' and I worry that it would take another complete crash for anyone to pay attention to me. Maybe I am being over-concerned, maybe I'm over-reacting but today I just feel like crying and I don't know what to do. I don't want to end up in hospital having had a stroke again or worse.

Sorry for the EPIC post - do these points sounds like valid worries or am I just being over-sensitive and this is normal?!

9 Replies

We most of us experience frustration with the NHS along the lines you have outlined.

I have written many Health Unlocked responses on the single issue that WE HAVE TO MANAGE OUR DOCTORS AS THEY WILL NEVER DO A PROPER JOB ON THEIR OWN. oF COURSE THERE ARE EXCEPTIONS WITH ADENBROOKES AND DAVID JAYNE BEING A KEY EXCEPTION.

It is sometimes difficult to get medical people to do their job properly but being assertive and never being fobbed off is an important aspect of this. Consultants can sometimes be reluctant to refer for second opinions because it interferes with their EGOs and boy do some consultants have egos!!

In your case a referral to David Jayne is the easiest thing in the world for your GP to do if they want to. Mine did it without any fuss.

My advice is as follows:-

Call Addenrookes Kidney Unit 01223 586796 and ask for David Janes secretary and ask her what it takes to get a referral. He will see Vasculitis folk from anywhere in the UK. He only does it thru the NHS and does not do private stuff.

With regard to your hospital appointments, the clerks only do what the consultants tell them to do in terms of appointment frequency. INSIST to your consultant that in this crucially important phase of your illnes that you need to have more frequent appointment. If this fails, BOMBARD the hospital with angry letters and copy one to the General Medical Coucil. Also consider changing hospitals. I have no idea where you live but there are some excellent Vasculitis clinics around the country.

IT IS YOUR BODY AND YOU MUST TAKE CONTROL OF IT Medical folk are crucial in this proces but they are not the responsible party if things go wrong. They never are!!

I also have CNS vasculitis which was also diagnosed in Sept 2011. I am just on my way to see my consultant so unfortunately haven't got time to reply in detail but I just wanted to say, you are not on your own. Stay positive if you can - I know it is very hard and stop apologising - you have every right to 'Rant' is you want to. You should hear me sometimes...! Remember it is your body and you have every right to be referred to whoever you want. Never take no for an answer - keep fighting. Sounds like your doctors have no idea what vasculitis is. Might be a good idea to ask Vasculitis UK to send them a copy of the Route Map.

With your complex condition, Addenbrookes is an excellent place to be referred to because they have a dedicated lupus & vasculitis clinic with a multi-disciplinary team approach, so all the doctors meet and discuss individual cases. Dr Jayne is one of the most highly respected doctors specialising in vasculitis in the world. CNS vasculitis is probably the most complex and variable type of vasculitis so you need to be seen by someone with both extensive knowledge of the disease and how best to treat it.

Getting a referral: it's always best to go through the proper channels, then it doesn't ruffle feathers or get people's backs up. If you ask for a referral for a second opinion it is nothing to do with the consultant - after all it is probably him/her that you are not satisfied with. Good consultants know when they are struggling with a case and ask for advice and are certainly happy to listen when it is offered.

So ask your GP for a referral to see Dr Jayne at Addenbrookes. It is your right under "NHS Choice" regulations and you can say that. If your GP is difficult, ask him for a written letter explaining why he will not comply with your request - never fails. It does NOT need approval from any Board! You do need to be assertive. You do have rights. It is your health, your future that is at stake.

If you have further problems come back here or send me a private message.

We had trouble getting a referral from our GP, at one stage he even said 'I'll play the doctor, you play the patient', he was telling us off for wanting to be involved!! We insisted, stood our ground and insisted again. He did at last write a letter and it just had to be faxed to Addenbrookes. We did also change to another GP within the practice and always went to see the same GP each time, we insisted!! so we had some continuity in my husband's care.

I don't think it is a rant at all.... Completely justified, and makes me feel lucky that I have got so far in the ten months since I was diagnosed.

I asked for a second opinion after the nurse practitioner at the rheumy clinic let slip that I was their only vasculitis patient, and they were the only people who had looked at my scans. I felt that they should be looked at by an experienced team, as I couldn't see that the rheumatologist would know what he was looking for. Consultant VERY unhappy and refused to refer me on - he told me that he had read all the relevant papers and knew all about vasculitis.

Then I found out that it is your GP that refers you, though it took some time (and an unhappy conversation that he had with my clinic) before he did so. The referral was actually quite easy - checking with the 'board' took about three days, and then the first appointment to Addenbrookes came through.

Addenbrookes are now having real problems getting hold of my past scans. I think some of the hitches are technical, and some are ego related, but we already know that significant problems were missed locally because they weren't sure what they were looking for.

Many of feel the same way; the trouble with our condition is that it is so hard to diagnose in the first place, and form some peeople diagnosis can take months and months of tests. sadly for some diagnosis is never achieved with the inevitable consequence.

Remember your opinions are always valid too. You have a right to them.

Thanks so much for your kind replies and suggestions. I have contacted my rheumotologist and very diplamatically asked him to refer me to Addenbrookes and am feeling much better about things... Let hope it lasts more than a couple of days! Everyone is right, we do have to take ownership - for too long I have been putting all my trust in drs and none in myself - it's time to be more proactive! Thanks again I really appreciate it x

Just back from an appointment at Addenbrookes. Good discussion, and I really felt that they were listening to me and not trying to fit me into a per-conceived model. So, I am coping much better and even able to get through 'bad' days in a better frame of mind.

I hope so - just to feel listened to by drs would be a great start! I'm really glad your appt went well and I hope your better frame of mind lasts. Thanks as it's great to feel supported by people on here x